Concord —
Every year, state legislators are tasked with making decisions on what programs receive funding and what programs do not.
For an agency like the Concord-based Minute Man Arc, which provides support for adults and children with special needs that run the gamut from day programs to residential and employment services, a tough budget season means fighting for funding. At its annual Legislative Breakfast April 2, the agency asked families who would be affected by program cuts to share their stories.
“I respectfully ask each of the legislators to put a face to the line item,” said Minute Man Arc Executive Director Marty Martini. Aaron’s story
To say Aaron Watt is social is an understatement.
As she addressed the crowd, mom Ruthie Lieberman of Lexington said, “Aaron is a very social, loving and charming boy.”
“And cute,” Aaron, 16, interjected, causing laughter among the crowd.
“It’s a lot of mental engagement with him,” said Lieberman before the breakfast. “We’re really blessed he’s so talkative and social, but it’s exhausting.”
Aaron has Cri du Chat Syndrome, a rare disorder caused when a part of chromosome 5 is missing. Because of his condition, Aaron needs constant attention. He needs help getting dressed, going to the bathroom and eating.
Locally, Aaron has been receiving services through Minute Man Arc since he was 7 or 8, attending an afterschool program and occasional vacation camps there. It was the family support coordinator at Minute Man Arc who suggested that Lieberman apply for a grant through the Department of Elementary and Secondary Education/Department of Developmental Services program.
“The DDS/DESE grant has been a life boat for our family,” said Lieberman. “With the state’s help we have been able to keep Aaron out of an expensive residential school and at home with his brothers and parents where we feel he belongs.”
Due to state budget cuts, the grant money the Lieberman-Watt family receives has been cut by 34 percent in the past two years. By the end of February, Lieberman said her family has already used up its annual allocation.
“We urge the elected representatives here today to imaging a day in our shoes and to preserve the family support programs that enable us to go to work, raise our children at home and keep our families intact,” said Lieberman. “This is the most cost effective and compassionate support the state can provide.”
Cri du chat syndrome is due to a partial deletion of the short arm of number 5, also called "5p monosomy". Approximately 90% of cases results from a sporadic, or randomly-occurring, deletion. The remaining 10-15% are due to unequal segregation of a parental where the 5p monosomy is often accompanied by a trisomic portion of the genome. These individuals may have more severe disease than those with isolated monosomy of 5p.
Most cases involve total loss of the most distant 30-60% of the material on the short arm. Fewer than 10% of cases have other rare cytogenetic aberrations (eg, interstitial deletions, mosaicisms, rings and de novo translocations). The deleted chromosome 5 is paternal in origin in about 80% of de novo cases.
Loss of a small region in band 5p15.2 (cri du chat critical region) correlates with all the clinical features of the syndrome with the exception of the catlike cry, which maps to band 5p15.3 (catlike critical region). The results suggest that 2 noncontiguous critical regions contain genes involved in this condition's etiology. Two genes in these regions,(SEMA5A) and (CTNND2), are potentially involved in cerebral development. The deletion of the (hTERT) gene localized in 5p15.33 may contribute to the phenotypic changes in cri du chat syndrome as well.CofIts name is a French term (cat-cry or call of the cat) referring to the characteristic cat-like of affected children. It was first described by in 1963. The condition affects an estimated 1 in 20,000 to 50,000 live births, strikes all ethnicities, and is more common in females by a 4:3 ratio.
Diagnosis is based on the distinctive cry and accompanying physical problems. and may be offered to families with individuals who have cri du chat syndrome. Children may be treated by speech, sound, and occupational therapists. Cardiac abnormalities often require surgical correction.
Cri du chat syndrome, also known as chromosome 5p deletion syndrome, 5p minus syndrome or Lejeune’s syndrome, is a rare genetic disorder due to a missing part of . Its name is a French term (cat-cry or call of the cat) referring to the characteristic cat-like of affected children. It was first described by in 1963.The condition affects an estimated 1 in 20,000 to 50,000 live births, strikes all ethnicities, and is more common in females by a 4:3 ratio
Every year, state legislators are tasked with making decisions on what programs receive funding and what programs do not.
For an agency like the Concord-based Minute Man Arc, which provides support for adults and children with special needs that run the gamut from day programs to residential and employment services, a tough budget season means fighting for funding. At its annual Legislative Breakfast April 2, the agency asked families who would be affected by program cuts to share their stories.
“I respectfully ask each of the legislators to put a face to the line item,” said Minute Man Arc Executive Director Marty Martini.
Aaron’s story
To say Aaron Watt is social is an understatement.
As she addressed the crowd, mom Ruthie Lieberman of Lexington said, “Aaron is a very social, loving and charming boy.”
“And cute,” Aaron, 16, interjected, causing laughter among the crowd.
“It’s a lot of mental engagement with him,” said Lieberman before the breakfast. “We’re really blessed he’s so talkative and social, but it’s exhausting.”
Aaron has Cri du Chat Syndrome, a rare disorder caused when a part of chromosome 5 is missing. Because of his condition, Aaron needs constant attention. He needs help getting dressed, going to the bathroom and eating.
Locally, Aaron has been receiving services through Minute Man Arc since he was 7 or 8, attending an afterschool program and occasional vacation camps there. It was the family support coordinator at Minute Man Arc who suggested that Lieberman apply for a grant through the Department of Elementary and Secondary Education/Department of Developmental Services program.
“The DDS/DESE grant has been a life boat for our family,” said Lieberman. “With the state’s help we have been able to keep Aaron out of an expensive residential school and at home with his brothers and parents where we feel he belongs.”
Due to state budget cuts, the grant money the Lieberman-Watt family receives has been cut by 34 percent in the past two years. By the end of February, Lieberman said her family has already used up its annual allocation.
“We urge the elected representatives here today to imaging a day in our shoes and to preserve the family support programs that enable us to go to work, raise our children at home and keep our families intact,” said Lieberman. “This is the most cost effective and compassionate support the state can provide.”
Cri du chat syndrome is due to a partial deletion of the short arm of number 5, also called "5p monosomy". Approximately 90% of cases results from a sporadic, or randomly-occurring, deletion. The remaining 10-15% are due to unequal segregation of a parental where the 5p monosomy is often accompanied by a trisomic portion of the genome. These individuals may have more severe disease than those with isolated monosomy of 5p.
Most cases involve total loss of the most distant 30-60% of the material on the short arm. Fewer than 10% of cases have other rare cytogenetic aberrations (eg, interstitial deletions, mosaicisms, rings and de novo translocations). The deleted chromosome 5 is paternal in origin in about 80% of de novo cases.
Loss of a small region in band 5p15.2 (cri du chat critical region) correlates with all the clinical features of the syndrome with the exception of the catlike cry, which maps to band 5p15.3 (catlike critical region). The results suggest that 2 noncontiguous critical regions contain genes involved in this condition's etiology. Two genes in these regions,(SEMA5A) and (CTNND2), are potentially involved in cerebral development. The deletion of the (hTERT) gene localized in 5p15.33 may contribute to the phenotypic changes in cri du chat syndrome as well.CofIts name is a French term (cat-cry or call of the cat) referring to the characteristic cat-like of affected children. It was first described by in 1963. The condition affects an estimated 1 in 20,000 to 50,000 live births, strikes all ethnicities, and is more common in females by a 4:3 ratio.
Diagnosis is based on the distinctive cry and accompanying physical problems. and may be offered to families with individuals who have cri du chat syndrome. Children may be treated by speech, sound, and occupational therapists. Cardiac abnormalities often require surgical correction.
Cri du chat syndrome, also known as chromosome 5p deletion syndrome, 5p minus syndrome or Lejeune’s syndrome, is a rare genetic disorder due to a missing part of . Its name is a French term (cat-cry or call of the cat) referring to the characteristic cat-like of affected children. It was first described by in 1963.The condition affects an estimated 1 in 20,000 to 50,000 live births, strikes all ethnicities, and is more common in females by a 4:3 ratio
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